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Can You Help Me?


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#1 stann2

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Posted 08 May 2012 - 11:35 AM

Hi Everyone,

I'm a new poster, and I'm also writing from England! I was diagnosed as a celiac 7 years ago when I was living in the U.S. I manage a strict no wheat, no gluten, no oats, rye etc. diet.

Over the last month or so, I've been having some medical problems, and I (and my doctors) are struggling to figure out what is going on. I wanted to post in case anyone had any ideas or suggestions for when I go back and see my doctor on Thursday.

I have been having pain in my lower right abdomen. It is there all the time, but it changes in its intensity... right now it's a dull ache, but it can be like a knife digging into me, or feel like I've been bruised. I've also had sharp pain at times under my left breast, and there is a twisting feeling going on there, too. I have constant watery stools, and I haven't been able to eat anything really for the last two weeks, due to nausea and also some vomiting.

The doctors have eliminated anything to do with my gallbladder, kidneys, liver, spleen, lungs. So now they are focusing on stomach and intestines.

I'm just wondering if any of you might have suffered similar symptoms at all, or have any idea what this could be. I was supposed to fly to the States on Saturday for a 3 week vacation, but I think I'm going to have to cancel :-(

Any help at all would be greatly appreciated!

Stann2 :-)
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#2 pricklypear1971

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Posted 08 May 2012 - 11:43 AM

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 stann2

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Posted 08 May 2012 - 11:49 AM

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.




Thanks so much for your response. Yes, the doctor actually had me on the FODMAP diet for about 2 weeks before the symptoms got worse... that pretty much eliminated everything except fresh fruits and veg. All I have eaten in the last 3 days is soup, but even that is proving to be problematic. I have noticed over the years that I have gotten more sensitive, but I am a stickler in what I eat. I write everything down and look for trends etc.

In 7 years, I have only ever gotten glutened twice, and both times were bad enough to warrant a hospital visit, so I'm not keen on that happening any time soon! I don't even know if these current symptoms are linked, but in my world when something goes on with the stomach and intestines, wheat/gluten is the first place I go to!

Thanks again for your suggestions :-)
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#4 mushroom

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Posted 08 May 2012 - 12:16 PM

Okay, let's see what's in your soup and see if that provides any clues?? :) Any new supplements or meds or toiletries? New partner? Anything different?
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#5 ravenwoodglass

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Posted 08 May 2012 - 12:27 PM

Have they done stool testing to rule out any nasty food borne illnesses like Salmonella? If not ask that be done ASAP. While that should have been one of the first things they did doctors sometimes don't. I had salmonella once and had symptoms similiar to yours. The doctor just kept saying my 'IBS' (wasn't diagnosed yet) was just acting up. It was 2 weeks before I could get them to test. I got an apology and a script for an antibiotic the next day.
I hope you figure out what is causing the problem soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Bubba's Mom

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Posted 08 May 2012 - 12:29 PM

I agree that it sounds like an additional food intolerance. Soy does that to me. It's in all sorts of things.

Did the broth you used for your soup have MSG or autolyzed yeast extract? They can give me trouble too.
Sometimes we know to look to our food logs for certain foods, but seasonings, spices, and additives aren't as obvious.

I hope you can get this sorted out. A hydrogen breath test might be a good idea to check for SIBO?
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#7 pricklypear1971

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Posted 08 May 2012 - 12:35 PM

If you go through the salmonella, sibo testing and are clear I'd look at the more difficult things like food groups - sals, histamines, amines, lectins. They are tricky to figure out but can be super problematic. From what I've read by posters here they can be as bad or worse to deal with than gluten.

I have a few other food issues - preservatives, colors, msg - but for the most part are easy to identify and avoid. When you get into salicylates its hard because they are in almost all foods. And they are especially in HEALTHY foods (fruits, veggies). So you can eat tons of healthy stuff and get sicker and sicker. Same with the histamines, amines, lectins.

I certainly hope you get relief soon. Best of luck to you.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 stann2

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Posted 09 May 2012 - 01:56 AM

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2
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#9 pricklypear1971

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Posted 09 May 2012 - 05:59 AM

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2



Your diet wouldn't have had to change for it to be a salicylate, amine/histamine, etc. reaction. It would be a new intolerance, so to speak.

And no, I don't have experience with Crohn's /UC.

They do advise a low residue diet for Crohns-perhaps try those foods?
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 MariaOfColumbia

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Posted 09 May 2012 - 11:55 AM

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.
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#11 pricklypear1971

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Posted 09 May 2012 - 12:18 PM

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.



Excellent. I thought that was in his checked list but I don't see it.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!


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